Mary Chapman, features writer —

Mary graduated from Wayne State University with a degree in journalism. She began her career at United Press International, then spent a decade reporting for the Bureau of National Affairs, Inc. (now Bloomberg Industry Group). Mary has written extensively for The New York Times, and her work has appeared in publications such as Time, Newsweek, Fortune, and the Chicago Tribune. She’s won a Society of Professional Journalists award for outstanding reporting.

Articles by Mary Chapman

RARE Compassion Program Opens for AADC, Other Rare Diseases

Global Genes has opened its 8th annual RARE Compassion Program, an education initiative that connects medical students with rare disease patients and their families, including those with aromatic l-amino acid decarboxylase (AADC) deficiency. The program aims to fill training gaps across rare diseases to produce a more equitable…

Rare Disease Consortium Seeks to Speed Treatment Development

The Critical Path Institute (C-Path) has announced a public-private partnership seeking to accelerate the development of safe and effective treatments for rare diseases such as aromatic l-amino acid decarboxylase (AADC) deficiency. The partnership, called the Rare Disease Clinical Outcome Assessment (COA) Consortium, will attempt to identify scientifically sound ways to…

Partners to Develop Novel Tools for Global Rare Disease Research

QualityMetric and Pulse Infoframe are collaborating to develop instruments across rare diseases to support global research initiatives, including those searching for treatments. The scientifically validated instruments and surveys would prospectively benefit patients and families as well as scientists, treatment developers, and advocates. More than 300 million people…

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

Shoshin for AADC Caregivers

Providing constant care and supervision to a child with a chronic disease such as aromatic l-amino acid decarboxylase (AADC) deficiency can be mentally, physically, and emotionally draining. A Japanese concept called shoshin might help you change your perspective and see your role in a new light. What is AADC…

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

Importance of Advocacy for AADC Deficiency

If your child has a disease as rare as aromatic l-amino acid decarboxylase (AADC) deficiency, you might want to be involved with health advocacy efforts, which generally promote health and access to care. Here is some information about advocacy work, and the ways in which you might participate. What is…

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…